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DCIS and IDC

Community Champion

Re: DCIS and IDC

Angela

 

You go girl Smiley Happy Smiley Happy xx

Member

Re: DCIS and IDC

Helena,

Thank you so much for today, I just replied thank you so the next time it will be something more but still polite. Happier knowing the way I feel is kinda normal.

Angela xx
Community Champion

Re: DCIS and IDC

Angela

 

On a Sunday!!  I would very politely say to her that whilst you appreciate her checking to see how you are but that it would be better if she text you on a weekday, silly woman.

 

You are right, we get on this rollercoaster of hospital appointments we go into automatics, then there is a gap before rads start. 

 

xxx

 

Member

Re: DCIS and IDC

Helena,

Thank you, yeah it has all happened so quick and I think I have been in auto pilot for most of it. I’m grateful it’s gone and I only have radiotherapy and genetics to go through. Like you there’s been other stuff, so I’ll maybe think about the counselling route. My boss is doing my head in too and a simple text from her yesterday (sun) set me off. Think it’s the ‘but it’s gone, you’re supposed to be jumping for joy and back to normal’ kinda comments or similar being implied.

I’ll look that up and follow, thank you

Angela xx
Community Champion

Re: DCIS and IDC

Just4me

 

Its amazing isnt it and that is only 3 weeks after your op, I am over 12 months and all I have is a thin line that just looks like a crease and I had 20 sessions of rads on it.

 

I think there is a point at which it suddenly hits you.  I remember when I was about to start rads, which was about 9 weeks after my op,  I felt that I was doing too well and was concerned that I was going to crash and burn, my boss arranged for me to have counselling which did me the world of good because I was dealing with other changes in the life of myself and my partner.  Dont know if you have thought about having some as it gives you a safe environment to talk to someone who is not emotionally attached to you.

 

If you go to the Going Through Treatment section, radiotherapy thread, I will be starting a December 2017 Radiotherapy string on there where you will be able to talk with ladies who are going through or starting rads in December

 

Helena xxx

 

 

Member

Re: DCIS and IDC

Anyone advise, have had WLE and waiting on radiotherapy which starts next Monday. My steri strips didn’t fall off so they were took off on Friday, meaning I just saw my scar for first then (3 weeks later) Scar is perfect and nothing wrong with it but guess it all sunk in and made it real. Don’t mean to sound dramatic, head has been mush the last week and was wondering when it’ll come clear or anyone else have the delayed reaction.

Thanks In advance
Member

Re: DCIS and IDC

Hi Lucia, glad your op went well. I think if it's only high grade DCIS it will possibly be no further treatment. I was put on tamoxifen for 5 years but think that was because they found a 3mm invasive hormone + tumour during the operation, no mode involvement. Hope all goes well with your results.
Xx
Member

Re: DCIS and IDC

Lucia,

Good to hear from you. Mine was high grade DCIS, margins clear so it was only radiotherapy for me

Angela xx
Community Champion

Re: DCIS and IDC

Lucia

 

Oh I cant help on that one, I know when I had my lumpectomy I was not allowed to shower because I did not have a waterproof dressing over the areas, that was because I am allergic to the sticky stuff on them, I just topped and tailed for the 10 days, but boy it was amazing the first time I did shower Smiley Happy

 

Your bcn will be able to tell you if you give her a call xx

Member

Re: DCIS and IDC

Thank you Helena.

Good to hear fromyou.

 

Meant to ask in my previous post.

 

I am unsure about showering 

 

Will ring bc nurse but was wondering procedure to follow i am sure they told me but brain is mush. Just home with the steri strips on was told they curl up come off. Showered from waist down . Washed too half avoided would and my sister washed my hair today lol 

 

XXxX lucia

 

 

 

 

Community Champion

Re: DCIS and IDC

Lucia

 

Great to hear that you are over the op and back home again.

 

Cant help you on the other things as I did not have DCIS but I am sure someone will be along soon who might be able to help,

 

Helena xxx

Member

Re: DCIS and IDC

Hi All ..Thank you all for asking after me. C

 

Had the surgery Monday got out off hospital yesterday. So it's one week today from op.

All went ok. So glad to be home. Doing my exercises and taking it easy. Walking around using arm ok but not lifting anything. Sleeping upright but if a pain. Plenty of support and help. Fingers crossed the recovery goes well. 

 

Just waiting on and dreading results from pathology hug h grade dcis but just worried you never know what could show up or lurking .

 

So my consultant is off this week so be next week i will get letter to go get results. So in last 21days i have been diagnosed biopsy scan and mastectomy node removal . Unreal. I can't get my head round that so quick but so glad that part is all done.

 

Any tips post operation most welcome . 

 

Hope everything going well with u all in recovery and surgery. 

 

Thanks again to you all as usual.

 

Does anyone know if it was only high grade dcis what next treatment would be really grateful for any replies.

 

Love Lucia xxxx

 

 

 

 

 

 

Member

Re: DCIS and IDC

Glad to hear you have it over you and are home recovering

Angela xx
Member

Re: DCIS and IDC

Hope all has gone well Lucia, wishing you a swift recovery.

 

I had my symmetrising surgery on Friday hopefully my last operation. I had to stay in for a couple of days as I kept bleeding, but all is well now.

Community Champion

Re: DCIS and IDC

Good luck Lucia -gosh that's short notice !!!
Member

Re: DCIS and IDC

Lucia,

Only seen your post this morning, hope you’re ok and all goes well today.

Angela xx
Member

Re: DCIS and IDC

Gosh Lucia! That’s not given you much time to plan or prepare for everything.  I expect that you have had a busy weekend.  My reconstruction was brought forward by two weeks but at least I had had a few months to get my head around it.

 

I hope everything goes well for you and that you will be home again before too long.  My mastectomy was nearly done as a day case except my carer didn’t fancy fetching me home and looking after me that night!  I went home the next morning so here’s hoping that everything goes as smoothly for you too. 🤞🏻🤞🏻

 

Have a very big virtual hug from me.

Ezzie. X

Member

Re: DCIS and IDC

Operation tomorrow.

 

Didn't expect it so quick just got letter late Friday afternoon.

It has been emotional since then. 

 

So hopefully all will go well.

 

Love to you all.

 

Lucia xx

 

 

Member

Re: DCIS and IDC

Dizzybee and Polly M,

Thinking of you both for today and tomorrow for your ops. Hugs and hope all goes well

Angela xx
Member

Re: DCIS and IDC

Thanks ezzie

 

That's what they are going to with me.

 

Hopefullywithin next few days I get a date.

 

So fingers crossed all goes well. Have to go get bras and hit boots for the non perfumed products for shower etc.

 

They think I will be in 3/4 days.  I am nearly sure she said fills are done as out patient.

 

Lucia

X

Member

Re: DCIS and IDC

Hi Lucia,

 

I am pleased to hear that your appointment went well and you now have a plan.  It sounds a good plan as well.  I had an expander inserted between mastectomy and reconstruction - about 5 months.  Mine was partially filled at the time of my op and then I had two further top-ups over about 6 weeks.  A little bit at a time is the best way to go.

 

I hope they don’t keep you waiting too long for your op.

 

Ezzie. X

 

 

Member

Re: DCIS and IDC

Went for appointment day.

Surgeon is going to do expander then fills later.

 

He thinks this is best for me at present as dcis is extensive and he recommends I go this route.

If I needed further treatment implant in at time off mastectomy would cause more problems. He could go ahead with implant if I wanted. I asked him what he would recommend for me and he said expander so I am taking his advice. 

 

So now waiting on date of surgery should know in next 5days when that is.

 

Nurse talked me through it all . But any of you been down that road off masectomy expander fills be grateful if you could let me know your experiences.

 

Lucia

 

Member

Re: DCIS and IDC

Hi Lucia,

 

I hope all goes well with your appointment today and that you get a plan of action sorted.  Remember, if you think of something you should have asked but didn’t, call your BC nurse afterwards.

 

I am doing really well even though it is not quite 3 weeks post op yet.  I am having to force myself to take things easy otherwise I would be doing too much too soon for my own good.  I have found the emotional aspect difficult at times since my diagnosis but having had my op now, I seem to have made a lot of progress with that aspect. 🙂.  Like Kiki, I can now begin to see a new ‘normal’.  Hopefully you will be feeling the same before too long.

 

Ezzie. X

Member

Re: DCIS and IDC

Hi all,

Can I ask hoe long after your WLE the steri strips came off. I’m not wanting them off or trying to take them off it’s just to know

Angela xx
Member

Re: DCIS and IDC

Lucia,

Good luck for tomorrow and hope you get all the answers you need. Will be thinking of you

Angela xx
Member

Re: DCIS and IDC

Thanks so much kiki.

Communicating with you having been through it is so good to know all these things. This has helped me a lot and to everyone on here sharing your experiences greatly eases things.

 

Lucia

Member

Re: DCIS and IDC

My surgeon was really helpful at the discussion appointment, he went through all the options and explained the risks involved. The breast cancer nurse also showed me the photo album of before and after photos and my photos were taken as part of my treatment journey. Are you going for the single op with pigskin mesh and implant? This is what I had and means no further operations are needed. The surgeon told me at the time (3years ago) he had done 50 of these and had 2 fail (due to allergic reactions) so I decided the odds were fairly good! The other implant option is to have the implants which are gradually inflated and then later replaced (in a second op) with a permanent implant. I think the initial recovery is probably longer from the one I had but no further op needed (until implant fails in 10-15 years if I’m still here!)

I know there are risks in the effect on implant if you need radiotherapy but chances of needing this with DCIS I think are slim, but it might be worth asking whether it is likely. 

Ask how long you will be in hospital (I was in 2 nights) and make sure you will have district nurse visits once home because you go home with one or two drains still in. 

You will need to wear a bra 24/7 straight after op and will need very soft ones without wire. (Asda do a very comfy one which I still use now) 

Ask if they will be taking a sentinel node ( Just one key node) and whether this will be done through the same scar. If they do this they will inject the breast with a dye before the op and your wee will be green/blue for a couple of days after!! 

I know it’s a horrible time and I was in a state leading up to the op but I think you’ll feel calmer once the operation is done. All the best. Xx

Member

Re: DCIS and IDC

Hi kiki.

Thanks for your reply much appreciated.

It's so good to hear you are 3years on and living life to the full.

It's all the uncertainty worry stage what ifs etc stage i am at.

To hear your back at work doing all things as normal gives me hope I will get through all this. 

Very up and down but trying to be positive .

Going on Wednesday to speak with consultant any advice what to ask.

Then after that I will just be waiting on date for operation.

 

Lucia

Member

Re: DCIS and IDC

Hi Lucia, I had high grade DCIS like you in two areas with small breast size so I opted for a mastectomy with immediate reconstruction with implant. I’m really glad I did as it was all over with in one op. This was nearly 3 years ago now and I no longer have an awareness of the implant all the time but it does take a year to 18 months before you stop being aware of it all the time!! I had 8 weeks off work and then went back on a phased return. It is very uncomfortable to start with and you must do the exercises they give you. I didn’t need radiotherapy or chemo as my nodes were clear but they did put me on tamoxifen for 5 years as they found a 3mm invasive tumour when doing the mastectomy. Hope this is helpful, if you want to know anything else just ask. I now go running and play badminton again, doing a 10 K next Sunday, so life has got back to “normal” though it’s always at the back of your mind, but you stop thinking about it every day! Good luck! Xx

Member

Re: DCIS and IDC

Thanks Ezzie.
How are things with you now.
Lucia
Member

Re: DCIS and IDC

Well I am going to opt for implant . Thought long and hard.

 

But need to see on Wednesday how

they go about this etc

I mean who knows what he will find when he does operation etc.

I am feeling anxious about that part. Can he do implant will i need more treatment is it in nodes so many things are going round in my head . I am struggling with this part.  

I honestly can't make head of tail of it all and so on turn is sending me off again again down anxiety road.

 

Great to hear from you all as always . 

 

lucia

 

 

 

 

 

 

 

 

 

 

 

 

Member

Re: DCIS and IDC

Lucia,

That’s who did mine, he’s really lovely. I can’t fault the city at all and have had top treatment, I’m moved on further again. Was at the city last Friday to see a Dr McAleer for my radio, back in again on Monday for my ‘planning’ day then it’ll be a bit after that I start.

I guess only you can decide with all the help and support you need to help you do it. Have you to let him know by this week? So if you decide mastectomy and recon on same day would that be the surgery part finished?

Dizzybee
Yeah I get that but tbh I hadn’t thought much about the DCIS being graded or even getting that report for some reason before i went in

Angela
xxx
Member

Re: DCIS and IDC

I think it's really common for DCIS to be high grade, it's still much better to be high grade DCIS than low grade invasive.

I still think it's hard to get your head round needing extensive surgery to remove it at the same time as being told how lucky you are, this is the one to get etc. 

Member

Re: DCIS and IDC

City hospital.

Mr Mallon I seen.

And just like you ANgela I posted on diagnose board that I was floored with high grade. Having been so optimistic.

 

Still am . 

 

 

He said he would do implant if I choose it same day as masectomy.

 

Member

Re: DCIS and IDC

Lucia,

What hospital are you attending?

The high grade bit floored me yesterday and guess made things real, a few didn't understand saying I should have been jumping for joy at getting the all clear.

If you get mastectomy just, how long will you have wait until the reconstruction then? I'm thinking you just want it out like I did and even more so with being high grade.

hugs Angela xx
Member

Re: DCIS and IDC

Yes the breadt cancer nurse was great. She showed me that book.

Surgeon said he would rather do reconstruction when he's doing operation he feels that was best for me long term.

 

But  I will ask him next week if he did operation without knowing I needed radio etc would that be ok.

As he would know how good bad it is and if I need further treatment unroll he performs mastectomy.

I am lucky to have great support from my family but on this site it's great to be in touch with people who really know what it is like and there experiences.

 

Thanks 

 

 

 

 

Member

Re: DCIS and IDC

Lucia

 

Having recently been through what you are now having to deal with, I can totally understand your dilemmas re reconstruction, etc.  Just chipping in with a suggestion, have you met with your breast cancer nurse to discuss your options?  Mine showed me some pictures of other (faceless) ladies and went through the procedures for each type of operation.  Symmetry was an issue for me as I am larger than your “small A cup”.  Your nurse may also review with you some of the emotional issues re waking up ‘flat’ post-op versus possible immediate reconstruction with an implant.  You don’t have to rule out reconstruction for ever, you may want to consider it when you are better able to cope with it.  I had delayed reconstruction with a gap of 5 months between ops.

 

I am also high grade DCIS and the recurrence rates, etc. following a mastectomy are really quite low.  Take heart, you don’t have to go through this alone.  If your real life family and friends aren’t able to support you, there will always be somebody here.

 

Loads of hugs

Ezzie x

 

Member

Re: DCIS and IDC

Dizzy and Angela.

 

Yes I have to have masectomy as there are two Areasin breast and small A cup.

 

Plus it is high grade. Wish has really concerned me. 

 

Yeah I am finding it difficult to cope now. I prepared myself mentally for masectomy but high grade D IS has threw me to high anxiety state again.

 

What a nightmare we are all in at times.

 

I to am in northern ireland Angela. 

 

I have one week to decide option reconstruction . Either implant or go flat.

 

Using other skin not an option.

 

Lucia

 

 

 

 

Member

Re: DCIS and IDC

Thank you all.

I’m not sure where you all are, I’m in Northern Ireland can honestly say I’ve been well looked after. I had my first app on the 21 Sep then biopsies 28th Sep then results and told DCIS on 11 Oct and surgery on 30th. It’s all been very quick. Yeah he seemed to have had to wait a lot longer.

Lucia, like D I will not forget the results and being told but I had a feeling it wasn’t going to be clear for some reason so I was slightly prepared. Like D I’d ask why a mastectomy and not a WLE to see first.

Angela xx
Member

Re: DCIS and IDC

Angela, I'm so pleased you got clear margins, and dead impressed at how quickly your oncology appointment has come through. I waited weeks for mine and then they wouldn't give me a date to start radiotherapy, they just kept saying DCIS wasn't a priority and they were very very busy. And I was worried they'd want me to go over Christmas and spoil things for the family.

 

Pecan, 13 weeks after surgery, that's even longer than mine was. Are you looking forward to getting on with it?

 

Lucia, welcome. Getting diagnosed is a shock to the system, even when you have a pretty good idea that's what's going to happen. Did you choose a mastectomy, or was it the only thing recommended?

 

I will never forget the day I got my diagnosis, all along they'd been telling me how lucky I was that it looked like it was only DCIS, not invasive, I'd need a lumpectomy and radiotherapy and then could go away and forget about it.

And then on the day, they said, 5cm of high grade DCIS, have you thought about a mastectomy? You can choose, wide local excision but you're borderline for achieving a reasonable cosmetic outcome,  will need symmetrising surgery to the other side. Or mastectomy with about five different reconstruction options.

 

It's hard to take in that much information at once, I was trying to get my head round it all, and in the end the surgeon told me to stop asking questions. 

 

So Lucia, sending you a hug, and I hope you're managing to take all this in better than I did. But it's okay to find it a struggle, it is a shock to the system no matter how much you think you're prepared for it.

 

 

Member

Re: DCIS and IDC

That is great ANgela.

X

Member

Re: DCIS and IDC

Thank you so much for your good luck, got my results today, 16mm high grade DCIS removed. Margins were clear so was told I’d be sent an appointment for oncology to have radiotherapy. Came home and letter for hospital was here so appointment is this Friday. I’ve also been referred to genetics because of family history and me apparently being so young (41).

I’m so pleased but my head has been melted today, think he reality of it all kinda just kicked in.


Angela xx
Member

Re: DCIS and IDC

Hi.

I posted the other day on newly diagnosed.was recommended to come here as I got my diagnosis today.

High grade dcis.having a masectomy .

I would be grateful if any off you having this diagnosis or similar going through this could post your story experience .

 

As I said on other post. Finding this place has been godsend helping me to face that appointment today and knowing when I got results that speaking to people who have had same diagnosis as me or same cancer will help me greatly at this time.

 

Thank you

 

Lucia

Member

Re: DCIS and IDC

13 weeks since my surgery, and next week I get to find out about the radiation schedule.

Member

Re: DCIS and IDC

Angela,

Good luck for your appointment today, hope you get good news.

 

I don't feel that I've been through all that much, I'm so thankful I've avoided chemo! So far everything has been doable, and always easier than I thought.

 

xx

Member

Re: DCIS and IDC

Hugs to you both Dizzybee and PollyM xx

You two have both been through so much, I don’t really don’t know what to say but I’m human enough to know when ya don’t ya don’t spurt out some crap for the sake of saying it. I’ll be thinking of you both on the 17th, I got a call to go this Wednesday for an app so assume this is for pathology results after

I’m glad I joined this site but still working out how to use it or get notifications

Angela xx
Member

Re: DCIS and IDC

Pollym 

I'll think of you on the 17th,  I'm  having my operation on the same day. Mine is very small compared to yours, but the fourth in fifteen months so I'll be glad to be done with it.

It has occurred to me that in having breast reduction, I may limit the chance of having a lumpectomy if I have a new primary on the good side. So fingers crossed I guess.

 

It's a good job you found your lump, DCIS doesn't usually form a lump. I didnt know anything about mine, despite it being 5cm. But the hospital shouldn't have missed yours, that's a bit worrying.

Member

Re: DCIS and IDC

Hi Dizzybee

Yes, it is a bit of a pain although to be honest thinking about cancer never really went away thanks to yearly mammograms and almost 10 years of hormone therapy i.e. Tamoxifen and Letrozole!  And you're right it is very difficult to think of it in terms of good news but I suppose with everything else that it could have been it is better news!  The awful thing is that I had a mammogram in May which was reported as normal - this was an error from the hospital as I should have been recalled - it is only that I found a lump in October that they went back to the May mammograms and realised! 

Operation is next week on 17th November but go in on 16th November to have a dye injection for the sentinal node biopsy! xxx

 

 

Member

Re: DCIS and IDC

Pollym

Oh bless you, that must be so hard to take when you've already had one bumpy ride on the rollercoaster.

I found it's really hard to get your head round the idea that you're supposed to be grateful that it's only DCIS, but in the next breath you're having to think about a mastectomy.  I was touch and go in terms of the amount that needed removing, but opted for lumpectomy in the end.

 

Sending you a hug, when is your operation?

xxx

 

 

 

Member

Re: DCIS and IDC

Hi All,

 

Got to agree - it is cancer.  I am in the unenviable position of just having had a diagnosis of DCIS on the right hand side.  This is 10 years after having had a grade 2 invasive cancer with lymph node involvement on the left hand side!  I had the works: chemo, radiotherapy, mastectomy, ANC and Herceptin and hormone therapy.  In fact, I am still taking hormone therapy although if my DCIS is hormone receptive then I will no doubt have to change that! 

 

Fortunately my staging scans (to check whether my original cancer had also spread) were all clear so my DCIS is the only thing I have to deal with! (unless they find anything else when they operate!)

As I did not have recon on the left hand side, I am going for another mastectomy as that way I will achieve symmetry! :-)

 

When I tell people they keep saying that it is good news!  I know they mean well and certainly in relation to what I have already been through then maybe it is - but to get it twice and to have two mastectomies hardly seems like good news! In fact to have one mastectomy is definitely NOT good news!

 

Love and support to all! xxx